Confused!

[hunpy66]

OK...my friend was placed in a hospice unit a few weeks ago. She requested her last rites and said that she could no longer go on. She was not eating and drinking very little. She was experiencing great difficulty swallowing anything. She said she wanted to die at home. We were able to make arrangements to get her home and in less than a week she is eating bowtie pasta without having it pureed. She is able to keep her bipap mask off for up t 20 minutes at a time. She is eating 3 meals a day. A medical professional that is a friend said that it appears as though she is controlling things the way she wans. She wanted to come home from the hospice so she stopped eating...would probably rather die than stay there. Now at home she is eating 3 meals a day without having anything pureed. We are confused. I can't believe that once you lose the ability to swallow with ALS it returns so quickly. Can someone help us understand what is going on here? Thanks!:?:

 

[Katie C]

Your friend the medical care worker may be on to something... is it possible that rather than being unable to eat, she was simply refusing to? I know that when my dad, who died from complications of vascular dementia, was in a convalescent hospital with a hip injury, he simply refused to eat. He was ABLE to eat.. just wouldn't. If that was the case with your friend, if she was using the not eating as a control source, than yeah, I could see her being able to eat again once she was in an environment she was more comfortable in. Just a thought.

Katie

 

[BethU]

I read recently that the refusal to eat is fairly common in dementia patients, although it doesn't sound like your friend has dementia. I know from my own experiences that when you are gravely ill, the appetite disappears. This is true of other mammals ... when cats or dogs are really sick and/or dying, they refuse to eat. It could be a normal body reaction: digestion burns a lot of energy, and if the body is fighting to survive, other organs may need the limited amount of energy more than the stomach.

Could it be that when your friend was "placed" in a hospice (was it against her will?), she got the message that she was expected to die, and depression took over, killing her interest in maintaining herself? Coming home to a normal situation could have simply given her a new lease on life. ALS doesn't improve like that. I somehow doubt that she was consciously manipulating the situation.

 

[Erica]

To hunpy,
I just read a few of your post re: your terminally ill friend.
You make it sound like she is faking the whole thing; couple more posts and you will make her look like she is faking her ALS.
It might be that she knows that her "end" is coming soon and she is completely taken over by her emotions.
If you are a real friend, then you will "listen to her", or will help to arrange for a professional counselor /clergy who can talk/listen to her. I'm pretty sure such resources are available thru Hospice.
There are so many caring and compasionate people on this forum who are taking care of their PALS, and from time to time they get tired, drained and need to vent, but they never accuse their PALS.
Sorry for being harsh,Cookie